Martin, this hits near home for me so much! I had a pan management doc say I was just not "trying" and also a physical therapist, and.... well, no one left in an ambulance or handcuffs, so I guess I handled it okay but it was close!
I tried three years and am still not 100 percent or even 90 or even 80 with my post-injury stuff---nerve damage is sometimes forever, and my soft tissue scarring is gonna take maybe more years or maybe enver ease up. So when I get the "you just have to try harder".... OMG, I go ballistic and flip out like you wouldn't believe.

I would say that the PCP is *not* the doc to talk to --- a neuro who specializes in post-brain-injury trauma is a good place to start for that kind of family consult. Brain injuries are *not* predictable, and you can't just decide off general knowledge what is or is not the "results" one "should" have or not have after TBI.. My MIL had a "mere" concussion three years ago---and she still has post-concussion issues after the "deadline" for them is passed. Well, whose "deadline"?

Maybe if your brother and sister went with you to a specialist? With all records of what the original hemorrhage did plsu the subsequent strokes? There might be endocrine system affected if the pituitary was affected, that kind of thing.

So there's my thoughts.

Or you could just fill two backpacks with 100 pounds of lead bars, and have each sister and brother haul that around every day all day and see how they do. We've contemplated this on the Fibromyalgia forum to give people some idea how easily we can tired and how badly we can ache from "easy" things like "shopping". (Not entirely joking.)

Deep breaths, and while I am glad your fam cares, wow, that was soooo outta line.

Gentle hugs and I noticed on check-in you said something about leg pain easing with elevation---anyone check for peripheral artery disease or nerve impingement in the sciatic or iliac regions? I can get awful pain from the scarring that's near my left sciatic---so that's my thoughts!

martin, damn!! do you have a neurologist? his input is is far more important....talk about betrayal. soemthing similar happened to me years ago and i fired the dr. flat out.

just because this doofus doesn't have the understanding to continue to find out what's going on with you doesn't mean he should pass such a judgement.

i think leo has a good suggestion. walk a mile in anyone's shoes before judging.

stay strong and believe in yourself. we know what it is to get through a day of the easy stuff. i can't even imagine trying to work 5 days a week again...

hugs!!

Hi all-

Thanks Leo- You hit the nail on the head on so many things! Of all the research I have done it shows that brain injurys have NO timetable and are different for each person. For my PCP to say I am "healed" is completely ignorant. All this was presented to me in an email. My response was scathibg but polite. I have been to several neuros without much luck. The top neuro in my area listened to all my symptoms, didnt acknowledge ANY of them and said "Oh, I think your problem is sleep apnea" . I had sleep apnea before my BI and it was a cakewalk compare to now. Sleep apnea made me tired. To give you an idea, "tired" is a GREAT day for me. I would give me left arm to just be tired. Try fatigued and exhausted.

Serenity- yes I am considering firing the DR. He has no idea what I have. But the neuros are not much help either. And FYI- The neurosurgeon sayd well you can walk so you must be ok.

Let me just say I have tried 50 different ways of explaining my condition to people and none have worked.
I think the best idea is yes to have someone walk around with 100 lb weights strapped to their legs all day and see how you feel. I truly feel if these people just walked ONE day in our shoes, they would never question our health again.

Frustrating!

Martin

PS- Leo and yes I will tell you the grocery store knocks the living daylights out of me. Any store does

Martin, that doctor should be fired. He's supposed to be the guy trying to help you. Not throwing you under the bus with your family! What an asshole! And did he tell you these things before he disclosed them to your family? I didin't think so.

I could not imagine in my wildest dreams, working 5 days a week, or 4 or 3 or 2 or 1! When you describe how much pain you're in at work, I can feel it from here! Thank heavens Leo was able to describe better what you deal with.

I know the ship has already sailed on this fiasco but, no, you are not crazy. Anyone under the same circumstances would feel the same way!

Hang in there buddy. Your family may not have your back, but we do!

Martin you said what many of have, how can anyone relate to something they don't feel themselves?!

Go find another GP. There are many out there and you sure don't need one that doesn't even take the time to listen or find some middle ground with you.

I suffer with extreme fatigue and there is a huge difference between it and being tired. Can you shorten your hours at work? There sure isn't anything wrong with it, with physical damage. Get all the rest you can get.

Your brain injury is yours to bear, you live it, you feel it throughout your body....don't stop fighting until you find answers. Research also, the web is a great resource.

Glad you can finally prop your feet up. Put it on your list of what helps to talk to the doc, it could help a lot with getting that dx.

Thanks for opening up with us and hope it helps to talk about it.
Comfy Cantankerous Hugs,
Toni

Martin,
That was totally unacceptable for your doctor to say what he did. He is an ass and I'm sorry he did that to you. I wonder if these doctors realize the damage they do with such insensitive comments.

I can totally relate with you on the work situation. I work 45-55 hours a week, plus on call one week a month. I come home exhausted every day. I love my job (most of the time) but worry how long I'll be able to keep up.

One day at a time my friend. Wishing you a better tomorrow.
Hugs, Vicky

Martin,

That Dr. is on asshole let me tell you. I Can't believe you work everyday after having been through all you have

Martin,

That Dr. is on asshole let me tell you. I can't believe you work everyday after having been through all you have. What is it that your brother and sister want from you? Thats just ridiculous and what happened to dr.-patient confidentiality. This primary care thought it alright to speak with them before speaking with you, and he didn't treat you for this to begin with?

I'm exhausted and I don't work anymore nor have I had a brain injury. Some days, it's tough to do anything at all.

Sorry you're dealing with all that. Hope things ease up for you soon.

Hugs and love,

Xoxoxo

Mary Ellen